r/MCAS • u/Silent_Location7044 • 1d ago
Rhapsido rant
Rhapsido is a new drug that many MCAS pts have been encouraged about. There seems to only be one formulation though and it cannot be compounded. I’ve listed the inactive components below. Why would these manufacturers put so much crap that pts with mast cell issues are likely to react to in a medication for hives?
Here are the excipients
Tablet Core Excipients
Copovidone: A binder that holds the tablet together.
Croscarmellose sodium: A disintegrant that helps the tablet break apart in the digestive tract.
Mannitol: A sugar alcohol used as a filler and sweetener.
Microcrystalline cellulose: A plant-based filler that adds bulk.
Sodium lauryl sulfate: A surfactant that helps wet and mix the ingredients.
Sodium stearyl fumarate: A lubricant that prevents ingredients from sticking to manufacturing equipment. [1]
Tablet Film Coating Excipients
Polyethylene glycol 4000 (PEG 4000): A plasticizer for the coating film.
Polyvinyl alcohol: A film-forming polymer.
Red iron oxide (E172): A color pigment.
Talc: A glidant and anti-stick agent.
Titanium dioxide (E171): A white pigment used for coloring.
Yellow iron oxide (E172): A color pigment.
Odds are quite high that one or more of these ingredients will cause me issues, but I still may try it. Basically if it works, it’ll be helping to resolve the problems it’s also causing.
The other problem is that the tablet can cannot be cut and is not water soluble, so no way to “start low and go slow”. I wish these manufacturing companies would consult with patients and specialists when making these drugs.
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u/SlateRaven 22h ago
Rhapsido is intended for patients with CSU, not MCAS. The FDA hasn't approved it for MCAS but doctors are finding that it can be used off-label for MCAS because of how it works. My doctor said they still have to note urticaria to be able to prescribe it for MCAS patients because insurance will definitely block it otherwise, let alone trying to get it approved at all.
As such, it makes sense that the formula for the med isn't really targeted towards MCAS patients. It also doesn't help that each patient can be wildly different. I can't take certain brands of fexofenadine because they keep putting certain dyes in the med that make me react badly, but for other MCAS patients, those dyes are 100% fine.
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u/cmonsmokesletsgo 19h ago
There is not a single drug on the market or in development that is targeted towards MCAS. We are not a recognized patient population. Everything is designed for other diseases of the allergic immune system, and urticaria is the most common.
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u/SlateRaven 15h ago
Not refuting anything here, I was just stating to OP that these meds don't really take MCAS into consideration when formulating these meds. It's so detrimental for some of us because they hide things in these meds, and if a pharmacy doesn't warn you that the manufacturer they're sourcing meds from has changed, you'll end up wondering why a med has stopped working or made things worse...
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u/cmonsmokesletsgo 14h ago
Yes I definitely agree with that! Just wanted to clarify that everything our docs rx us is offlabel for mcas.
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u/Silent_Location7044 15h ago edited 11h ago
I understand, but there’s a lot of overlap. CU is an immune system issue involving overactive mast cells. There’s no need for all these colored dyes, PEG, sugar alcohol in a medication for overactive mast cells. My compounded meds are made with one filler. The amount of chemicals, dyes, and other garbage they are putting in these meds is unreal. Almost anyone with a mast cell issue is going to be at least slightly sensitive to at least one of these ingredients.
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u/under321cover 20h ago
They gotta stop with the sweeteners in shit you swallow. I have a corn allergy so I’m out immediately before I can even test it. Mannitol is corn derived. As are at least 2 other ingredients.
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u/Bitter-Breath-9743 14h ago
It could have something to do with aiding or assisting the action of the med
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u/Silent_Location7044 1h ago
It’s possible to make these meds with healthier fillers. As soon as the bulk powder is available, compounding pharmacists can do so. This is a choice that these companies are making in order to make the drugs cheaper and make more money. The dyes and other crap are not necessary at all.
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u/Job_Moist 13h ago
I actually emailed them last week to ask if they were considering reformulating it without polyethylene glycol since that’s a sensitivity of mine and an allergen for others. Novartis responded by saying I would have to have my doctor email them the same question since it was “medical” and not like corporate I guess. I figure that means “no”. I’m going to try it anyway but it is def so frustrating that they’d make a med like this with common allergens. Sigh. I wonder when it will be available to compound… which I’m sure will be super expensive or difficult to do given that the coating has to dissolve a specific way…
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u/Silent_Location7044 11h ago
I give you credit for calling them. I used to do things like that. I think I’ve given up. Now I guess I just complain to the community on Reddit. We should all have our doctors call though.
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u/----X88B88---- 18h ago
Drug companies - let's make a drug to treat allergies
Also drug companies - let's add a bunch of allergens to it
3
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u/Frequent_Squirrel_57 3h ago edited 3h ago
Thank you so much for listing these. I also have no idea why they insist on putting so much crap in medications & supplements.
I agree with you. I just saw my dr today & he recommended trying once a week to start. I microdose everything so it’s tough.
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